Friday, September 6, 2013

A Game Changer, perhaps?

So, I spend a lot of time with doctors. 

In fact, this morning I directed someone to the bathroom and instructed them how to label their urine sample. 

True story.
[Last name first, my friends, then first initial.]

But after my most recent trip to Mayo in May, and the "official" diagnosis of a never-before-seen undiagnosed disease, I decided I really needed a break from the medical world...

...which lasted approximately 72 hours until I landed myself in the hospital with pneumonia. Oops.

So after a few rounds of pharmaceuticals and a most lovely family vacay, my spirit was renewed and ready to embark once again upon the Great Medical Leave of Absence.

Right, you know where this is headed. Didn't last long. 

My extra special mystery disease has proven to be progressive and one of my resume boosters is the ability to break formerly functioning body parts while doing absolutely nothing. The giant polka dot elephant in the room knew that eventually this would prove problematic as the disease continued to move, but it has always been more tolerable to blissfully sip my green juice and watch Downton Abbey.

Friends, consider it problematic.

I won't traumatize you with details, but simply put, my inner alien has spent the last few months traveling to my lungs, my bladder, and now my brain. Medical hiatus officially over.

Fueled with renewed vigor to continue searching, in early July I saw a physician about 30 minutes from my home. The doctor listened to my story, examined me from head to toe, and tried to look through my medical records without too many "youhavegottobekiddingme" looks.

A couple "chapters" into my records, he looked me square in the eye and casually told me he knew what was wrong with me.

Um...what? I must have heard you incorrectly?

"Lydia, you have Lyme Disease."

Now, I'd like to tell you that this was some sort of interplanetary cosmic moment where the sun parted cloudy skies, trumpets announced the arrival of silky white horses, and rainbows spilled from the heavens.

Nope. Didn't happen.

My scout's honor very first (thankgoodnessinmyhead) thought?


Yep, crap.

From my research, my studies, and own health investigations, I knew that Lyme Disease treatment was SUPER controversial. As in people have lost their medical licenses kind of controversial. As in people agree more about politics than they do about Lyme Disease kind of controversial. 

I am talking the Sharks and the Jets, people.

And, as a sidenote, haven't I been tested for this before???

So I have spent the last few months taking myself to the Lydia Buschenfeldt School of Tick Borne Disease. I have read countless articles and spoken to PhD students currently conducting research. I snuck into a medical library and read case studies. I spoke to pharmacists and I spoke to herbalists. I joined online forums and asked questions. I read books and interrogated every doctor in my path.

Short of holding a summit of the Deer Ticks of America, I've covered just about everything.

See the thing is, if this really and truly was the path for me, then I wanted to know that the decision I made about treatment was one that was backed by my own personal extensive research and understanding. 

I note the controversy, I understand the options, and I have to be able to make the best treatment choice for ME.

So I handed over 15 vials of blood, I researched, and I waited. 
Then I got called back for more blood, I researched, and I waited. 
And then I waited some more.

It goes without saying that "waiting" is really a code word for "losing my mind."

Turned out my waiting/stressing/what-if-ing was one heck of a waste of energy. 
I do have a tick borne disease. In fact, I have three.

Yep, three.

But Lyme? Yea, that was negative.

Yes, friends, I am in possession of two fancy-schmancy tick-borne infectious diseases, Bartonella and Babesia, and an extremely rare (duh) protozoan parasitic tick-borne disease.

I start treatment on Monday, and while I am "excited" to be getting rid of these things, I'm still progressing with much trepidation. I will be taking HEAVY loads of antibiotics that will eradicate everything in sight - good, bad, and in between. While I don't have the best track record with drug side effects, it will likely be the die-off symptoms of the infections that prove to be the most challenging.

Yes, die-off. As in a body of dead bugs.

Feel free to start renting me as party entertainment.

It's a pulsing schedule, so I won't take the drugs every day and I will likely begin to learn the schedule of what days I will be a functioning human being, and what days I'm better off planning to be home. This treatment will likely go on for at least a year, but will be augmented along the way to address all of the different diseases.

It goes without saying that it is next to impossible not to wonder if this is "it." Has this been the problem all along? Have I literally taken up residency in freezing cold Minnesota when I had diseases from a bug the size of a poppy seed?

Yes, of course I wonder. Despite a body full of bugs, I am human.

But wondering is really and truly, an energy vampire. It will suck the life out of me if I let it. I may never know the cause of my hard drive crash. I may never completely reverse my symptoms. That's ok.

The way I figure, I have a lot of diseases. 
In fact, I have more diseases than I do fingers and toes.
So, in my book, it can't hurt to start scratching three off the list, right?

Prepare yourself bugs, the end is in sight.


  1. Wow, Lydia, you must be so excited, confused, cautious, and hopeful all at the same time! It is rare that I announce my intention to "pray" for someone but the truth is that I will pray very hard that maybe your medical journey will take, at the very least, a detour. I truly hope that you get some peace and that your body will prepare to enjoy all of the lessons this journey has offered you.

  2. Lydia, I just heard about your blog about a half hour ago from Janet, a FB friend. I plan to go back and read through your entries. She posted a link because just a few hours ago I brought up Lyme disease and the horribleness of it--the controversy--the yuck. We live in Rochester, but Mayo is not where my husband was diagnosed. We had to travel about 45 minutes from here to start the road to recovery. I haven't blogged for a long time about it--it simply wore me out to talk about it and think about it all of the time. My hope for you is normalcy and energy and recovery! Kristi at

  3. I'm so happy for you that what was causing you so many internal crashes has been discovered. Do you remember Lauren Herman from Penn Wynne? She was diagnosed with Lyme Disease a couple of years ago after spending years in a similar situation as you. Her body just kept failing her. You guys should get together and swap war stories. If you need anything let me know...even if it's to meet up at Sweet Freedom, a place I also love :) ~laura

  4. I have been in your shoes and too some degree, I still am. I too have been battling the unknown, well at least that is how it started. Last fall, I started to get horrible rashes and headaches and was told that I was suffering from allergies or having a bad allergic reaction. I was given steroids and creams and sent about my merry way. Fast forward a couple of months and my husband finds me unresponsive on the floor of our living room. I was taken to the hospital where I was being tested for stroke like symptoms. I was paralyzed on one side, throwing up repeatedly and severe migraines. Needless to say, no stroke. The dr was scratching his head. Sent me home with pain meds and an antibiotic.

    I was back in the dr's office the next day with a severely high fever. A physician assistant looked at me and asked "have you pulled any ticks off of you"? I told him that I did a couple of months ago. See, I was a police detective and was on a search in the woods when I went through a nest and got covered. I never even once thought about a tick disease when I first started getting sick.

    Needless to say, I was sent for blood tests. I got a call immediately that stated that I did not have Lyme's but I had Rocky Mountain Spotted Fever, another tick disease. I was started on doxycycline immediately. Fast forward two weeks and I was worse off then ever. I was referred to an infectious disease doctor, whom has been awesome. He tested me for everything under the sun and found out that I had two more tick infections on top of the Rocky Mountain Spotted Fever. By this time, I was so debilitated, that he direct admitted me to the hospital where I spent the next 10 days hooked up to numerous IV's and monitors. My heart had slowed down and my liver enzymes were up. I was able to come home with the arrangements of a pic line and nurse.

    I thought I was getting better a couple of months after coming home and asked to go back to work on desk duty. Big mistake. Two and a half months after going back, I was pulled back out because my symptoms came back full force. I couldn't hold any food in, fevers everyday, migraines, joint pains, etc. The infectious disease dr felt helpless because he had done everything that he could think off. He referred me to Johns Hopkins Hospital, UVA Hospital, to a rheumatologist and eventually a gastro dr. The gastro dr did a colonoscopy and found that the tick diseases had damaged my intestines and colon and I am currently trying to heal that with medications and trying to avoid surgery.

    So I understand completely how you feel. Please know that I was like you and researched until I couldn't take it anymore. I reached out to people suffering like me. Just know that you are not alone in the fight and the CDC should do more.